Dementia Care Practice Recommendations for Professionals Working in a Home Setting - Phase 4
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Alzheimer’s Association Campaign for Quality Care Dementia Care Practice Recommendations for Professionals Working in a Home Setting Phase 4 Building consensus on quality care for people living with dementia
The Alzheimer’s Association is the leading voluntary For more information, visit www.alz.org or contact:
health organization in Alzheimer care, support and
Elizabeth Gould, M.S.W.
research.
National Office
Our mission is to eliminate Alzheimer’s disease Alzheimer’s Association
through the advancement of research; to provide 225 N. Michigan Ave., Fl. 17
and enhance care and support for all affected; and to Chicago, IL 60601-7633
reduce the risk of dementia through the promotion Phone: 312.335.5728
of brain health. elizabeth.gould@alz.org
The Alzheimer’s Association offers quality care
©2009 Alzheimer’s Association. All rights reserved. education programs for professionals who work in
This is an official publication of the Alzheimer’s Association but may be nursing homes, assisted living residences and home
distributed by unaffiliated organizations and individuals. Such distribution
settings. For more information, call 1.866.727.1890
does not constitute an endorsement of these parties or their activities by
the Alzheimer’s Association. or visit www.alz.org/qualitycare.
Table of Contents
Introduction 5 3 : S a f e t y a n d P e r s o n a l Au t o n o m y 40
D e m e n t i a a n d I t s E f f e c t s 7 Dementia Considerations 40
Care Goals 41
1: T h e B a s i c s o f G o o d H o m e C a r e 8
Recommended Practices 41
Ten Warning Signs 8
Communication with Individuals and Family 10 4: Home Safet y 43
Involvement of Family and Support Services 11 Dementia Considerations 43
Behaviors 12 Care Goals 43
Decision-Making 15 Recommended Practices 43
General Home Care Planning and Provision 17 Home Environment 43
General Safety 43
2: Personal Care Guide 19
Fall and Accident Prevention 44
Social Relationships and Meaningful Interaction 19
Bathroom Safety 44
Dementia Considerations 19
Medication Safety 44
Care Goals 19
Kitchen Safety 45
Recommended Practices 19
Food Safety 45
Pain Management 22
Guns and Firearms 45
Dementia Considerations 22
5 : E n d - o f - Li f e C a r e 46
Care Goals 23
Dementia Considerations 46
Recommended Practices 23
Care Goals 46
Personal Care 25
Recommended Practices 46
Dementia Considerations 25
Communication with Individuals and Family 46
Care Goals 25
Assessment and Care for Physical Symptoms 47
Recommended Practices 25
Assessment and Care for Behavioral Symptoms 49
Bathing 26
Emotional and Spiritual Support 49
Oral Care 27
Family Participation in End-of-Life Care 50
Dressing 27
Grooming 28 6 : H o m e C a r e P r ov i d e r T r a i n i n g 51
Toileting 28 7: Sp e c i a l T o pi c s 53
Eating and Drinking 29 Making the Most of a Home Visit 53
Dementia Considerations 29 Considerations for Those Who Live Alone 53
Care Goals 30 Clinical Medication Management 54
Recommended Practices 30 Transitions in Care 55
Falls 32 Elder Abuse and Neglect 56
Dementia Considerations 32 Caregiver Stress 57
Care Goals 33 Travel Outside of the Home 57
Recommended Practices 33 Emergency Preparedness 58
Wandering 36 Provider Self-Care 59
Dementia Considerations 36 8: Glossary 61
Care Goals 37
Recommended Practices 37
1
Campaign Overview
For more than 25 years, the Alzheimer’s S t r at e gi e s f o r Q ua l i t y C a r e
Association® has been committed to advancing All aspects of our Quality Care Campaign — from
Alzheimer research and enhancing care, education the selection of priority care practice areas to the
and support for individuals affected by the disease. development of recommendations, educational
Building on our tradition of advocacy for improving programming and advocacy — are based on the
the quality of life for people with dementia, we best available evidence on effective dementia care.
launched the Alzheimer’s Association Campaign We are using four strategies to achieve the overall
for Quality Care in 2005. campaign goal:
• To encourage adoption of recommended practices
Approximately 70 percent of people with
in assisted living residences, nursing homes and
dementia or cognitive impairment are living at
home settings, we advocate with dementia care
home. To better respond to their needs, we
providers.
have joined with leaders in dementia care to
develop the evidence-based Dementia Care • To ensure incorporation of the practice recommen-
Practice Recommendations for Professionals dations into quality assurance systems for nursing
Working in a Home Setting. The home setting homes, assisted living residences and home
recommendations, in addition to those named settings, we work with federal and state
below, are the foundation of the campaign. policymakers.
• To encourage quality care among providers, we
Each year we focus on a different set of care
offer training and education programs to all levels
recommendations that can make a significant
of care staff in assisted living residences, nursing
difference in an individual’s quality of life.
homes and home settings.
Our Phase 1 recommendations focus on the basics
• To empower people with dementia and family care-
of good dementia care, food and fluid consump-
givers to make informed decisions, we developed
tion, pain management and social engagement.
the Alzheimer’s Association CareFinder™. This
Phase 2 covers wandering, falls and physical
interactive, online tool educates consumers about
restraints. Phase 3 covers end-of-life care practices
how to select care providers and services and how
and issues. And Phase 4 addresses all of these
to advocate for quality care.
practices as they relate to the home setting.
To date more than 30 leading health and
senior care organizations have expressed support
and acceptance for one or more phases of the
Dementia Care Practice Recommendations.
We are grateful to these organizations for their
counsel during development of the recommenda-
tions and for helping to achieve consensus in
our priority care areas.
2
Organizations Supporting the Dementia Care
Practice Recommendations, Phase 4
AARP Gerontological Advanced Practice Nurses
American Academy of Home Care Physicians Association
American Academy of Hospice and Palliative Hospice and Palliative Nurses Association
Medicine National Association for Home Care and
American Association of Homes and Services Hospice
for the Aging National Association of Social Workers
American Dietetic Association National Gerontological Nursing Association
American Geriatrics Society National Hospice and Palliative Care
American Medical Directors Association Organization
American Occupational Therapy Association National Private Duty Association
American Physical Therapy Association PHI
American Society of Consultant Pharmacists
American Speech-Language-Hearing
Catholic Health Association
Association accepts the recommendations
Center for Health Improvement
We are enlisting the support of these and other organizations, as well as consumers and policy-
makers, to help us reach the goal of our Quality Care Campaign — to enhance the quality of life for
people with dementia by improving the quality of dementia care in assisted living residences,
nursing homes and home settings.
3
Phase 4
Introduction to Dementia
Care Practice Recommendations
Phase 4
Edited by Elizabeth Gould, M.S.W., Jane Tilly, Dr. P.H., and Peter Reed, Ph.D.
Dementia Care Practice Recommendations Underlying the home care practice recommenda-
for Professionals Working in a Home Setting tions is a person- and family-centered approach
is the latest in a series of dementia care practice to dementia care. This approach involves tailoring
recommendations offered by the Alzheimer’s care to the abilities and changing needs of each
Association. Three previously published manuals person affected by the disease. It also respects
(Phases 1, 2 and 3) provide recommendations the cultural values and traditions of each family and
for care in nursing homes and assisted living counts family members as part of the care team.
residences.
The recommendations emphasize the importance
This manual offers best practice recommendations of personalized care and relationship building.
for professionals providing care in a home setting. Providers are encouraged to learn about an
The recommendations represent the latest individual’s cultural background, personal history,
research as well as the experience of care experts. abilities, and care choices in order to make
informed decisions and build rapport. They are
Specifically, the Association used the following also encouraged to build strong relationships with
information to develop its home care practice family members who are part of the care team
recommendations: and to understand the family’s choices concerning
• A summary of research findings from Dementia, care. Providers who have good dementia training will
a NICE-SCIE Guideline on Supporting People be most effective in delivering personalized care.
with Dementia and Their Carers in Health and
This manual is divided into eight main sections.
Social Care; commissioned by the National Institute
Following a brief introduction and general descrip-
for Health and Clinical Excellence (NICE) and the
tion of dementia and its effects, the first section
Social Care Institute for Excellence (SCIE) and
provides an overview of good home care. The
published by The British Psychological Society
Personal Care Guide that follows is at the heart of
and Gaskell in 2007.
the manual. It defines dementia considerations,
• The combined knowledge of Alzheimer’s
care goals and recommended practices related
Association chapter members, its early stage
to a broad range of care topics. The recommended
advisor team, and experts from more than 20
practices for each topic include guidelines for
national associations. These individuals worked
assessment, suggested provider approaches and,
collaboratively to translate research, knowledge
where applicable, tips for modifying the environ-
and experience into practical recommendations
ment. Additional sections on personal autonomy,
for those providing care in the home.
home safety and end-of-life care supplement
the Personal Care Guide using the same approach.
Sections on home care provider training, special
topics and a glossary of terms complete the manual.
5
Use of the Terms “Provider” and
“Family Caregiver”
There are a variety of paid “providers” who care
for people with dementia in their home. Paid home
care providers can range from professionals (e.g.
nurses and therapists) and paraprofessionals
(e.g. personal care aides), to non-medical persons
(e.g. homemakers and chore services workers)
who deliver services to persons with dementia.
These providers may function independently or as
members of a care team. For the purpose of these
practice recommendations, the focus is primarily
on those providers who are part of a team, partici-
pate in care planning meetings and provide care
determined by a formal care plan(s). In some
cases, there is reference to a specific discipline or
level of care provider such as direct care provider
(including certified nursing assistants, home health
aides and personal care assistants), professional
practitioner (including nurses, social workers and
rehabilitation therapists), or supervisor.
Throughout this document, the term “family
caregiver” refers to any family member, partner,
friend, or other significant person who provides or
manages the care of someone who is ill, disabled
or frail. There may be more than one family care-
giver involved in a person’s care.
6
Dementia and Its Effects on the Person
with the Disease and Family Caregivers
Dementia is an illness that affects the brain and Dementia also affects family caregivers.
eventually causes a person to lose the ability to Seventy percent of persons with dementia live in
perform daily self care. All areas of daily living are the community, and family caregivers are largely
affected over the course of the disease. Over time, responsible for helping them to remain at home.
a person with dementia loses the ability to learn Family caregivers must be vigilant 24 hours a day
new information, make decisions, and plan the to make sure that the person with dementia is safe
future. Communication with other people becomes and well. Their responsibilities include: house-
difficult. People with dementia ultimately lose keeping; shopping; managing finances; managing
the ability to perform daily tasks and to recognize medications; helping with daily activities, such as
the world around them. eating, drinking, bathing, and dressing; ensuring
that someone who wanders can do so safely; and
In the beginning of the disease, the person overseeing other health care needs which may
may be aware of some changes in memory and include conditions like diabetes or heart disease.
rely more on others for reminders. As dementia Providing constant, complicated care to a person
worsens, the person may get lost easily and be with dementia takes a toll on family caregivers.
unable to drive or manage finances. In advanced Family members and other unpaid caregivers of
dementia, the person will lose the ability to eat, people with Alzheimer’s and other dementias are
drink, bathe, dress, or use the toilet without more likely than non-caregivers to report that their
assistance. Eventually, someone who is dying of health is fair or poor. (Alzheimer’s Association
dementia may not be able to swallow safely, talk, 2009 Alzheimer’s Disease Facts and Figures)
or get out of bed and will be totally dependent on
others for help with every daily activity. Throughout
the course of the disease, individuals may become
sad, agitated, wander or resist care. These behav-
iors are a form of communication that signifies the
person’s emotional condition and reactions to care.
7
1 The Basics of Good Home Care
Each person with dementia has a unique set of 2 . C h a l l e n g e s i n p l a n n i n g o r s o lv i n g
abilities and care needs that change over time as p r o b l e m s . Some people may experience changes
the disease gets worse. Yet, even when the in their ability to develop and follow a plan or work
disease is most severe, the person can experience with numbers. They may have trouble following a
joy, comfort, and meaning in life. The quality of life familiar recipe or keeping track of monthly bills.
depends on the quality of the relationships people They may have difficulty concentrating and take
with dementia have with their loved ones, their much longer to do things than they did before.
community, and their home care providers. What are typical age-related changes? Making
occasional errors when balancing a checkbook.
Ten Warning Signs 3 . Di f f i c u lt y c o m p l e t i n g fa m i l i a r ta s k s at
Studies have shown that the signs of early People with
h o m e , at w o r k o r at l e i s u r e .
dementia are subtle. They can be mistaken for Alzheimer’s disease often find it hard to complete
typical age-related changes and easily missed by daily tasks. Sometimes, people may have trouble
patients, caregivers, and even physicians. Providers driving to a familiar location, managing a budget at
and family caregivers are often the first to see work or remembering the rules of a favorite game.
these signs. Direct care providers need training What are typical age-related changes?
not only to recognize the signs but also to under- Occasionally needing help to use the settings on
stand when and how to communicate changes to a microwave or record a television show.
supervisors, discuss observations with the home People
4 . C o n f u s i o n wi t h t i m e a n d p l a c e .
care team, or consult with an external expert. with Alzheimer’s can lose track of dates, seasons
Families can also benefit from education about the and the passage of time. They may have trouble
warning signs. Family caregivers who witness understanding something if it is not happening
signs of dementia should be referred to a physician immediately. Sometimes they may forget where
or other qualified practitioner. they are or how they got there. What are typical
age-related changes? Getting confused about
The Alzheimer’s Association has developed the
the day of the week but figuring it out later.
following “Ten Warning Signs”:
5 . T r o u b l e u n d e r s ta n d i n g v i s ua l i m ag e s a n d
1. M e m o r y c h a n g e s t h at d i s r u p t da i ly l i f e . s pat i a l r e l at i o n s h ip s . For some people,
One of the most common signs of Alzheimer’s, having vision problems is a sign of Alzheimer’s.
especially in the early stages, is forgetting recently They may have difficulty reading, judging distance,
learned information. Others include forgetting and determining color or contrast. In terms of
important dates or events; asking for the same perception, they may pass a mirror and think
information over and over; relying on memory aids someone else is in the room. They may not realize
(e.g. reminder notes or electronic devices) or family they are the person in the mirror. What are typical
members for things they used to handle on their age-related changes? Vision changes related
own. What are typical age-related changes? to cataracts.
Sometimes forgetting names or appointments,
but remembering them later.
86 . N e w p r o b l e m s wi t h w o r d s i n s p e a k i n g o r The
10 . C h a n g e s i n m o o d a n d p e r s o n a l i t y.
writing. People with Alzheimer’s may have mood and personalities of people with Alzheimer’s
trouble following or joining a conversation. They can change. They can become confused, suspi-
may stop in the middle of a conversation and have cious, depressed, fearful, or anxious. They may be
no idea how to continue or they may repeat them- easily upset at home, at work, with friends or in
selves. They may struggle with vocabulary, have places where they are out of their comfort zone.
problems finding the right word or call things by What are typical age-related changes?
the wrong name (e.g. calling a watch a “hand- Developing very specific ways of doing things and
clock”). What are typical age-related changes? becoming irritable when a routine is disrupted.
Sometimes having trouble finding the right word.
Other conditions commonly associated with
7. Mi s p l ac i n g t h i n g s a n d l o s i n g t h e a bi l i t y
changes in cognition in older adults, with and
t o r e t r ac e s t e p s . A person with Alzheimer’s
without dementia, include delirium and depression.
disease may put things in unusual places. They
When these conditions are suspected, the
may lose things and be unable to go back over
person’s health care providers should be notified
their steps to find them again. Sometimes, they
promptly.
may accuse others of stealing. This may occur
more frequently over time. What are typical • Delirium is an acute, usually reversible, worsening
age-related changes? Misplacing things from of cognition characterized by inattention and
time to time, such as a pair of glasses or the disorganized thinking along with altered levels of
remote control. consciousness. Caregivers should look for a
sudden change in the person’s baseline mental
People with
8 . D e c r e a s e d o r p o o r j u d g m e n t.
status.
Alzheimer’s may experience changes in judgment
or decision-making. For example, they may use • Depression is another common condition that,
poor judgment when dealing with money, giving along with depressed mood or irritability, can
large amounts to telemarketers. They may pay be associated with changes in memory. Memory
less attention to grooming or keeping themselves and depressed mood often improve with
clean. What are typical age-related changes? antidepressant therapy.
Making a bad decision once in a while.
9 . W i t h d r awa l f r o m w o r k o r s o c i a l
ac tiviti es.A person with Alzheimer’s may start
to remove themselves from hobbies, social activi-
ties, work projects or sports. They may have
trouble keeping up with a favorite sports team or
remembering how to complete a favorite hobby.
They may also avoid being social because of the
changes they have experienced. What are typical
age-related changes? Sometimes feeling weary
of work, family and social obligations.
9Communication with Individuals Ov e r c o m i n g C h a l l e n g e s
and Family Language, hearing or vision problems as well as
low levels of health literacy may present obstacles
To ensure that home care is person-centered and
to effective communication. Providers should
aligned with an individual’s choices, there must be
take the following issues into account for both
good communication among the individual living
individuals and family.
with the disease and his or her health care proxy
decision-maker, family caregivers and entire care • A person with dementia may sometimes require
team. Cultural perspectives on functioning and more time to process information and may take
disability may vary a great deal. To be effective, longer to respond to a question.
providers must understand the communication • Short sentences, visual cues or pictures may help
challenges presented by those living with the person with dementia understand what he or
dementia. They must also consider, what, how she is hearing. Hearing loss is very common in
and when information should be delivered to family older adults and is often undiagnosed.
and other team members. • Interpreters may be needed if English is not the
primary language or if the person with dementia
C o n n e c t i n g wi t h I n d i v i d ua l s
uses sign language.
Consider the following communication techniques
• Determine if the person with dementia or the
when communicating with a person who has
family caregiver has difficulty hearing or seeing.
dementia:
Do they require a hearing aid or eyeglasses? Are
• Introduce yourself by name those items being used and are they effective?
• Address the person by the name he or she prefers • Some people may not be “health literate.”
• Approach the person from the front They may need help to understand some health
• Speak to the person at eye level concepts, terminology, or the implications of
treatment options. When health literacy is low,
• Speak slowly and calmly, and use short, simple
simple verbal explanations may be more effective
words
than written information.
• Allow enough time for the person to respond
(counting to five between phrases is helpful) T h e L a n g uag e o f B e h av i o r
• Focus on the person’s feelings, not the facts All behaviors, including reactions to daily care, are
• Use a comforting tone of voice a form of communication. The direct care provider
is responsible for interpreting and responding to
• Be patient, flexible and understanding
behaviors. For example:
• Avoid interrupting people with dementia; they may
• A person repeatedly refusing a certain food or
lose their train of thought
beverage may mean he or she does not like it.
• Allow individuals with dementia to interrupt you, or Simply changing the item may eliminate this
they may forget what they want to say behavior. If it persists, it is possible that the person
• Limit distractions during communication (e.g. turn has trouble swallowing. This may require a feeding/
off the radio or move to a quiet place) swallowing evaluation.
• Increase the use of gestures and other non-verbal
communication techniques
• Observe the individual to recognize non-verbal
communication
10• A person who resists getting dressed may be in
pain due to arthritis. Controlling for pain and/or
minimizing physical movements that cause pain
can address this behavior.
• A person who seems to misunderstand a lot or
does not respond when spoken to may have
hearing loss. Proper care and use of hearing aids
or other recommended assistive listening tech-
nology is important.
• A person who resists a bath may feel under attack
when someone tries to help take off clothes.
Giving the person a view of the tub, starting the
bath water before undressing, and keeping the
bathroom warm can promote participation in
undressing.
C o n n e c t i n g wi t h Fa m i ly
• Holding regular care planning meetings is impor- Involvement of Family and
tant. As dementia progresses, they provide Support Services
recurring opportunities to create understanding
Family members may play a vital role in helping
about a person’s changing needs and to discuss
a person with dementia remain at home. They
the implications of those changes on care choices.
provide a variety of support services and may be
Families need to know the symptoms of dementia
trained by the home care team to deliver skilled
and understand the progression of the disease.
services such as changing a sterile wound dressing
• Every family needs easy access to a home care or performing diabetes care. In addition, commu-
team that responds to its needs and questions. nity-based services providing home-delivered
Schedules vary — providers come and go — so meals, transportation or home modification often
communication can be difficult. Providers must play a role. This patchwork of support services
coordinate their work with families and others, requires coordination and communication to
including a private care manager the family or be successful.
insurer hires. Responsive communication can
Family members may need assessment to
include team meetings that involve family. It can
identify their own needs for education, support
also include assigning a primary nurse or social
and services and reassessment as the person’s
worker to the person with dementia, and keeping
dementia progresses or the caregiver’s health
regular contact through home visits, phone calls, or
and emotional well-being is impacted. A social
(if available and appropriate) email, text messages
worker can refer families to community resources
or other electronic technologies.
such as the Alzheimer’s Association.
NOTE :Providers should take steps necessary to
comply with state and federal law concerning
privacy matters.
11Providers must be aware and respectful of each • Incontinence
family’s culture. A family’s decision to use support • Recognizing and managing pain
services — and the types of services they use —
• Risks for falls
may be influenced by its culture or by barriers to
care, such as limited English proficiency or a lack • Alternatives to restraints
of support services in the community. • Diet and meals; signs of swallowing difficulty
• Preparation of foods the person can eat safely
C o m m u n i c at i o n T e c h n iq u e s
• Caregiver stress and use of respite
Consider the following techniques when
• Safety issues such as driving a car
communicating with families:
• Make information clear and easy to understand
Behaviors
• Consider the family’s level of health literacy
• Most persons with dementia will experience
• Reduce the amount of medical jargon and explain behavioral symptoms. Early on, people may have a
any unfamiliar terms hard time concentrating and experience irritability,
• Use visual aids and demonstration when anxiety or depression. Later in the disease other
appropriate symptoms may occur, including: sleep distur-
• Clearly explain dosages and when medications bances, outbursts, emotional distress, paranoia,
should be given delusions (belief in something not real) or hallucina-
tions (seeing, hearing, or feeling things that are not
• When appropriate, provide printed information in
there). These symptoms are hard on people and
the family’s preferred language, and use inter-
their caregivers.
preters if necessary
• These behaviors and the emotional state of
• Check for comprehension by having the person
persons with dementia are most often forms of
with dementia and the family caregiver repeat
communication because they cannot make their
instructions in their own words
needs known in other ways.
• Hold routine home care meetings
E X AM P LE :
A person may resist getting dressed
because of joint pain due to arthritis but he or she
H o m e C a r e M e e t i n g s
cannot express this discomfort in words.
Routine home care discussion with caregivers may
include the following topics: B e h av i o r a l Sy m p t o m s — C au s e s
• Changes anticipated as the disease progresses — and Care
what to look for, when to contact a doctor, • A person showing behavioral symptoms needs
information on delirium and ongoing monitoring a thorough medical evaluation especially when
• Care goals and possible adjustments over time symptoms come on suddenly. If an examination
is not performed and symptoms are treated
• Preparing for loss of decision-making capacity
with drugs, the medication could not only mask
• Wandering risks and precautions the symptom but also create a much more
• Actions that place patient or family at risk of harm dangerous situation.
• Altered sleep/wake cycle
12E X AM P LE : A person exhibiting distressed behaviors • Providers and family need to be able to recognize
may actually have an underlying urinary tract behavioral symptoms of dementia. Direct care
infection that should be treated with antibiotics. The providers need to communicate these symptoms
use of psychotropic medication in this case would
to supervisors or other members of the home
mask behaviors and leave the underlying cause
untreated. care team.
• Behavioral symptoms can also have non-medical A checklist, like the one below, can help identify
causes. These causes include: a change in the behavioral symptoms:
person’s care, such as admission to a hospital;
a change in care provider; the presence of house- 3 Changes in ability to focus
guests; or a request to bathe or change clothes (e.g. attention or concentration)
at a different time of day. Assessment should 3 Changes in level of alertness
also address personal comfort, pain, hunger,
3 Emotional or physical agitation
thirst, constipation, full bladder/bowel, and fatigue.
Loss, boredom and isolation can also cause
3 Changes in mood
behavioral symptoms. 3 Hallucinations
• An environmental assessment of the home 3 Delusions
directed at possible hazards is appropriate. 3 Suspicion of others
A comfortable, simple, clutter-free environment 3 Withdrawal from others
can reduce behavioral symptoms. Creating a
3 Groaning or calling out
comfortable environment can involve adjusting
room temperature, providing supportive seating, 3 Making faces (e.g. grimacing)
eliminating glare, reducing noise levels and offering 3 Striking out or other signs of distress
enjoyable activities (e.g. listening to music or 3 Wandering
reading). Providers should help families understand
3 Pacing
the importance of a comfortable home
environment. 3 Rocking
• If behavioral symptoms are related to care
methods, focus on unmet needs. • Providers should help determine if a person’s
behavior is due to a known cause, such as medica-
• Use gentle caregiving techniques including:
tion effect, the home environment (e.g. noise,
warnings before touching a person or beginning
clutter), a change in health (e.g. infection, pain or
care, apologies for causing distress and keeping
dehydration) or emotional conditions (e.g. depres-
the person covered and warm.
sion, boredom), that requires assessment and
• Listen to and validate the person’s concerns, possible treatment.
address those concerns, and provide
reassurance.
13• Providers need training to determine the causes, • Medications can be effective in some situations,
or “triggers,” for a person’s behavioral symptoms. but they must be used carefully. Medications
NOTE : Triggers may include difficulty seeing or are most effective when combined with non-
hearing, hunger, thirst, pain, lack of social interaction pharmacological approaches. It is important to
or poor care. evaluate a medication’s effect on a person’s health,
• If a trigger is identified, every effort should be mental function, comfort, risk of falls, changes in
made to change the situation in order to appetite, dizziness and quality of life.
minimize the behavior. • If a person uses medications, physicians
• If no trigger can be identified, distracting the (in consultation with members of the home care
person with dementia by changing the task, the team) need to consider how they will be given:
environment, or the topic of conversation may • Can the person with dementia take the medica-
be helpful. tions on his or her own?
• With appropriate assessment and treatment by • If not, who will help with medications?
members of the health care team, behavioral
• Can the practitioner who prescribes the medicine
symptoms can be reduced or stabilized. Success
adjust the schedule for taking it so family or
depends on:
home care team members are available to help?
• Identifying the symptoms, their timing and
• Who will be responsible for overseeing changes
frequency. All members of the care team,
in medications?
including family, can provide information.
• Is mail order or pharmacy delivery of medications
• Using assessment to understand the symptoms’
preferable?
causes.
• What kind of insurance coverage does the
• Treating any medical causes, and changing care
person have to help pay for medications?
or the environment to solve the problem.
• When medications are used, specific emotional
• Monitoring symptoms and changing care as
symptoms should be identified and tracked so that
needed.
the effects of the medication can be monitored.
• Family caregivers and direct care providers need In general, it is best to start with a low dose of a
training in behavior management for persons with single drug. The smallest dosage should be used
dementia. They also need access to behavioral for the least amount of time possible. Side effects
experts when behaviors cause distress to the require careful monitoring. Effective treatment of
person living with dementia. one core symptom may sometimes help to relieve
U s e o f M e d i c at i o n s other symptoms.
• If non-pharmacological approaches are not effec- • The decision to use an antipsychotic drug
tive, medication may be helpful for those with needs to be considered with extreme caution —
severe behavioral symptoms or those who may carefully weighing potential risks against potential
harm themselves or others. benefits for the particular person and the particular
situation. Sometimes medications can increase
the frequency or severity of the symptom being
treated. When considering use of medications,
14it is important to understand that no drugs are Decision-Making — Issues, Roles
specifically approved by the U.S. Food and Drug and Responsibilities
Administration (FDA) to treat behavioral and
• People with dementia and family caregivers need
psychiatric dementia symptoms and FDA analysis
information from knowledgeable professionals
shows that both conventional and atypical
about: the signs and symptoms of dementia, the
antipsychotic medications are associated with
course of the disease, dementia as a fatal illness,
an increased risk of death in older adults with
causes of physical and behavioral symptoms,
dementia. The FDA has asked manufacturers to
home environment design, safety, effective
include a “black box” warning on all antipsychotic
approaches to care, and community resources
medications. The warning describes the risk of
such as the Alzheimer’s Association. Using this
death when people with dementia use these
information, the person and family can make the
medications and includes a reminder that they are
best decisions about care.
“not approved for the treatment of patients with
NOTE : A diagnosis of dementia does not necessarily
dementia-related psychosis.” With any medication
mean the person does not have the ability to make
change, health care providers need to monitor
decisions; the person should be involved as much as
patients carefully and be familiar with the risks and possible in his or her own care planning.
benefits of these therapies.
• The ability of a person with dementia to under-
• Research evidence as well as FDA warnings stand care choices and make decisions about care
and Centers for Medicare & Medicaid Services’ varies with the progression of the disease and the
guidance on the use of antipsychotics show that type of decision required.
people with dementia should only use these drugs E X AM P LE : A person may be able to choose that
when their behavioral symptoms are due to mania they want treatment but unable to choose among
or psychosis, present a danger to the person or complicated cancer treatment regimens.
others, or cause the person to experience extreme • People with dementia will have choices about
distress, a significant decline in function, or who makes care decisions when they cannot, so it
substantial difficulty receiving needed care, which is important to find out who the primary decision-
may be life threatening. maker will be.
• Health professionals who specialize in non- • Whenever possible, a family member should be
pharmacological and pharmacological interventions designated as the primary contact for all members
for behavioral symptoms associated with dementia of the home care team. However, it is important to
can help with diagnosis and treatment of severe or recognize that different family members can have
disturbing behavioral symptoms. different responsibilities.
• When more than one agency serves a person,
coordination of care, interagency coordination
agreements and communication are important.
15• Use of hospital intensive care units and
ventilators
• Artificial nutrition and hydration (feeding tubes
and intravenous fluids)
• Use of antibiotics
• Use of preventive health screenings, medications
and dietary restrictions
E X AM P LE : Colonoscopies and mammograms may
not be useful for people who are at the end of life
and cannot benefit from or understand these some-
times painful procedures.
E X AM P LE : Risks and benefits of medications may
change when a person is near the end of life.
• Individuals and families need to discuss care for
other diseases a person may have, such as
diabetes and congestive heart failure, in relation to
A dva n c e P l a n n i n g
the severity of dementia.
• The goals of the person and family for end-of-life
E X AM P LE : Hospitalization to treat congestive heart
care provide the care team with direction for care
failure during the end stages of dementia could be
planning. Ensure that an interpreter is available to
hard on the person and may not prolong life.
assist with non-native English speakers for these
important conversations.
L e g a l a n d O t h e r I m p o r ta n t
• A surrogate needs to make decisions based on C o n s i d e r at i o n s
what the person would want, taking into consider-
• Decisions about treatments and tests need to be
ation expressed preferences, values and past life
part of the care plan and translated into medical
patterns. When discussing goals, individuals and
orders when appropriate. Some states and locali-
families need to consider and make decisions
ties have protocols to implement translation into
about the issues listed below:
medical orders such as the Physician’s Orders for
• The steps to take and who to contact when Life Sustaining Treatment (POLST).
death is near or has occurred. The steps will vary
• Individuals and family members should have an
based on the person’s advance directives, if he
opportunity to rethink their decisions as the
or she has them.
person’s needs or condition change.
• Cardiopulmonary resuscitation (CPR)
• Federal law requires providers who accept
• Medical procedures and tests (e.g. surgery, Medicare and Medicaid payment to document
blood tests, dialysis) whether patients have advance directives and to
• Increasing the level and complexity of care in provide them with information about their
the home decision-making rights.
• Hospitalization • Providers can help prepare for end-of-life care
• Entry into a nursing home discussions by providing materials that can assist
in making advance planning decisions.
• Enrollment in hospice
16• The appropriate provider (e.g. a social worker or • The proxy decision-maker will need complete
nurse) needs to obtain signed copies of existing information from and some education by the home
advance directives and make them available to the care team when considering the trade-off between
entire care team. A coordinated effort should be prolonging life and maximizing comfort after a
made to ensure that the documents go with the medical crisis or major change in the person’s
person if he or she enters a nursing home, assisted condition.
living residence or hospital. • State law determines who serves as the proxy
• During care planning, discuss the person’s choices decision-maker if the person has not appointed
about end-of-life care and any related doctors’ one.
orders such as “comfort care only,” or “do not
hospitalize.” Based on these choices, the person General Home Care Planning
and family need to know what the agency will do and Provision
at the end of life. C a r e P l a n s
• Families and home care providers need to under- • Effective care plans use information from the
stand that calling 9-1-1 or other emergency services assessment to design a set of services that will
will likely result in attempts to resuscitate a person meet a person’s needs and maximize his or her
when he or she has stopped breathing, unless a independence. Services need to fit the needs and
physician’s “do not resuscitate” orders are immedi- history of the person being served and be coordi-
ately available. Family and providers need to agree nated with the care that family and home care
about what they will do when the person is close providers deliver.
to death. • Care plans should build on the person’s abilities
and use strategies like breaking tasks into small
H e a lt h C a r e P r ox y D e c i s i o n - M a k e r
steps, modifying the environment, and using
• Advance planning cannot deal with all care decisions adaptive equipment. Physical and occupational
that must be made during the course of a person’s therapy services can help decrease the risk of falls,
dementia, so the role of a proxy decision-maker is improve a person’s mobility and his or her ability
important. All 50 states and the District of Columbia to carry out daily activities.
permit individuals to assign another person (or
• Care plans need to ensure safety with walking,
proxy) to make health care decisions on their behalf.
transferring and performing daily tasks.
NOTE : By having a properly designated proxy
decision-maker, complications that arise from • Effective care planning includes the person with
disagreements among family members may be more dementia (whenever possible), family members
easily resolved. and all staff, including direct care providers, who
NOTE : Situations where the proxy seems to be acting regularly interact with the person.
against the person’s best interest or a person with
• Ask family members to describe how they
dementia has chosen the proxy under threat should
be reported to the home care team for possible
work successfully with the person in completing
referral to adult protective services. daily activities, and adopt these methods when
providing care.
• Ideally, the proxy decision-maker is someone
who knows the person’s values and choices about
end-of-life care. The person may also express
particular values and choices in the document
appointing the proxy.
17• When providers and family members understand P r ov i d e r App r oac h e s
the care plan and determine roles and responsibili- • People with dementia are most comfortable with
ties, they will be able to provide better care. a regular routine at home. Knowing a person’s daily
• The care plan stays useful over time if it is regularly routines, such as how he or she likes coffee or tea
updated and modified as a person’s needs, abilities and what time he or she gets up and goes to bed,
and wishes change. is helpful information that will guide the care plan.
• Care plans should identify family caregivers and • Going to bed at the same time every night, with
address family caregiver needs. the same routine, can make sleep more restful.
• Create a schedule with the caregiver that • A schedule for use of the toilet that follows
provides him or her with suggestions for self- the person’s usual toileting patterns can reduce
care. Sometimes, caregivers do not set aside accidents.
time to eat, rest, and address their own health • When possible, consistent staff assignment
and emotional well-being. (having the same direct care providers at the same
• Provide dementia care training to family care- time of day) creates a more predictable daily
givers who need or want it. Offer referrals to routine and can improve the quality of the relation-
physical therapists, speech language patholo- ships among direct care providers, people with
gists, and occupational therapists for strategies dementia and their families.
the family caregiver can use to help the person
carry out daily activities. Consult with behavioral
specialists when the person’s behaviors are
difficult for the family caregiver to manage.
182 Personal Care Guide
Dementia Considerations
• Like everyone, people with dementia need mean-
ingful social relationships.
• Direct care providers need training and support
to understand how to have good relationships with
people who have dementia.
• Meaningful activities are important to dementia
care. They can address underlying needs that can
lead to behavioral symptoms, help people maintain
their ability to carry out daily activities, help reduce
behavioral symptoms, and improve quality of life.
• Every event or interaction between the individual
and a provider is a potentially meaningful activity.
Care Goals
• Help the person with dementia have and sustain
S o c i a l R e l at i o n s h ip s meaningful social relationships.
a n d m e a n i n g f u l i n t e r ac t i o n
• Develop trust with the person by showing a
Activities are meaningful when they reflect a sincere interest in the social relationships and
person’s interests and lifestyle, are enjoyable to activities he or she enjoys. A person with dementia
the person, help the person feel useful, and can sense a care provider’s lack of interest or
provide a sense of belonging. impatience.
• Design meaningful activities that match a person’s
interests, choices and abilities and that providers or
family do with — not to or for — the person so that
he or she can have the best quality of life possible.
Recommended Practices
A s s e s s m e n t
• Determine whether the person initiates activities
or needs prompting and invitation to take part.
Many people enjoy various activities they would
not necessarily begin on their own.
• A comprehensive assessment by the home care
team gathers information from the family and helps
home care providers understand which activities
are meaningful for the person with dementia.
19• To involve people in the most meaningful activities, • Share something with a person; look at his or
determine their: her family photographs, talk about a keepsake, or
• Ability to move (with and without assistance) encourage the person to share part of his or her
life story.
• Daily routine and schedule
• Capacity for mental stimulation • If appropriate, explain in understandable
terms what is happening during a bath and offer
• Ability to communicate (e.g. status of speech
reassurance such as, “I’m going to wash your
and hearing)
arm now. You’re doing great!” When working
• Interest in social relationships with a person who is functioning at a lower
• Desire for spiritual participation level, it may be better to use fewer words and
• Cultural values more physical and non-verbal communication.
For example, placing a hand on the person’s
• Work history and habits
arm and smiling.
• Leisure interests and choices such as favorite
• When preparing a meal, include the person with
music and movies
dementia in the process by helping him or her to
• Opportunities for transportation to community participate in some way.
activities
• Based on the person’s abilities, he or she could
• Need for referral to an occupational therapist, tear the lettuce, stir the soup or place the bread
physical therapist or speech-language patholo- on the plate. It is important to have the person
gist for an assessment and intervention plan with dementia perform a task that he or she is
• Families and people with dementia should be capable of and can do safely.
invited to share with providers a life story that • The occupational therapist can do an assess-
summarizes the person’s past experiences, ment and determine the appropriate intervention.
choices about activities and other aspects of daily
• A person with dementia can relate to others, even
life as well as his or her current abilities.
if he or she has problems talking.
• Regular and ongoing assessments are needed
If a person’s life story shows that he or
E X AM P LE :
because interests and abilities change. People with she enjoys music, play music or sing a song that is
dementia can develop new interests and try new familiar.
activities.
• Throughout the day, introduce activities that
minimize behaviors such as confusion, agitation,
P r ov i d e r App r oac h e s
and restlessness. Rest breaks should be integrated
• Social relationships and meaningful activities are
into the routine to reduce the potential for fatigue.
the key to a good care plan.
• Help make individuals with dementia more
• Providers consistently interact with the person
comfortable and secure in the environment by
with dementia as part of the care plan. The
validating their thoughts, ideas and experiences.
methods and strategies used can greatly improve
the person’s quality of life. Provide cueing and • Promote independence in daily activities by struc-
assistance to engage people directly. turing the environment and the task to match the
person’s level of functional and cognitive ability.
20E n v i r o n m e n t
• The home environment can create opportunities
for meaningful activity.
• Encourage family members to develop a path
that encourages walking outside in a safe
environment.
• Have family members set up a fish tank or
display a colorful painting that could interest the
person and facilitate conversation.
• Assemble and offer items of interest like a
basket of fabric swatches, greeting cards, calen-
dars with attractive photos, or touchable items
such as aprons, hats and safe tools.
• Make comforting family photos available to
the person.
• Encourage family members to start a vegetable/ Ac t i v i t i e s
herb/flower garden that the person with • People need to use their skills during daily activi-
dementia can help nurture. ties to remain as independent as possible.
• The environment should reduce a person’s confu- • Use methods like one-step verbal direction to
sion and fear, and promote comfort and safety. help people carry out activities. For a person
• Ensure that activities occur in a quiet room. with dementia, participating in a cooking task is
more meaningful than watching it. Depending on
• Ensure good lighting and room temperature as
the person’s ability, he or she might measure or
well as comfortable seating for the person with
mix the ingredients or hold the spoon.
dementia.
• The outcome of an activity is not as important as
• Attempt to decrease clutter and other
the person’s participation in it.
distractions, such as background noise, in the
environment. • Gardening can be pleasant whether or not a
plant grows.
• Refer to an occupational therapist or physical
therapist for a home safety assessment and • Dusting can be satisfying even if it is ineffective.
recommendations for home modifications. • Washing the car, even if it is not dirty, can be fun.
• Monitor for safety issues such as wandering. • Offering activities that take into account a person’s
abilities can promote involvement. An occupational
therapist’s or speech-language pathologist’s
assessment provides specific information regarding
the person’s cognitive abilities which can be used
to match abilities to activities.
• Word games may be successful for some people
with dementia but upsetting for others.
21• Opportunities for involvement in the community
are important to feeling part of it.
• When appropriate, support activities such as
attending a play, doing a community service
project, or playing with local children through a
special program.
• If a faith community is important, be sure to
help the person remain connected with his or
her place of worship. Help the faith community
understand dementia by asking the local
Alzheimer’s Association chapter to provide
education to the clergy and congregation.
• The activity’s length needs to fit the individual’s
abilities.
• Thirty minutes or less of one activity is best for
most people with dementia.
Pa i n M a n ag e m e n t
• Adapt activities to the person’s skills and abilities.
Some people cannot sit through an entire activity Pain is common in persons with dementia, just
but may enjoy just a part of it. as it is in other older adults. Pain is any unpleasant
E X AM P LE : A person may not be able to participate in physical, emotional, social or spiritual experience.
the entire preparation of a meal, but can help serve It can have a quick onset or persist over time.
the meal or set the table.
• People who cannot move easily can enjoy Dementia Considerations
activities like listening to music, watching a • Many people with dementia may not volunteer
movie, reminiscing, sensory stimulation and information about pain, but, when asked, they can
seated exercises. often verbalize the experience, particularly when
the affected area is moved or examined.
• People with dementia often have trouble
expressing pain making it difficult to assess pain
and discuss approaches to treatment.
• People with dementia communicate pain in
different ways — verbally and non-verbally. As
verbal ability declines, people with dementia rely
more on non-verbal communication. This can
include behavioral symptoms and resistance to
care. These symptoms can lead to the inappro-
priate use of psychotropic medications.
22Care Goals • For people with dementia who cannot answer
questions about discomfort or pain, all home care
• Improve pain assessment and treatment by
providers must watch for signs that may indicate
routinely assessing pain as the “fifth vital sign” —
the person is experiencing pain.
just as a nurse, home health aide, or certified
nursing assistant would measure blood pressure, • Observing people during self-care may indicate
pulse, respiration and temperature. some movements are painful. Indications could
include: slow movement, holding and/or
• Enhance a person’s quality of life by controlling or
frequently touching an extremity, or favoring an
minimizing pain and improving his or her function
extremity or other body part.
and ability to socialize.
• Tailor pain relief methods to each person’s needs
• Pain may be the cause of behavioral symptoms,
such as restlessness, grimacing, crying out or
and risks, and adjust treatment as the person’s
groaning.
condition changes.
• When pain occurs and the cause is not known,
Recommended Practices assess the person’s condition. Ask family about
the person’s past pain experiences and
Assessment document the responses.
• Pain assessment should occur regularly, especially • All providers need to help identify a person’s pain
when people have health problems, such as and communicate the signs to their supervisor or
arthritis and cancer, that are likely to result in pain to the home care team.
or they exhibit pain in any way (e.g. facial grimace, • When people are in pain, they need to see a
moaning, or guarded extremity). qualified health professional who can manage
• There are many tools that measure pain for people the pain effectively.
with dementia. Identify the one that works and use • Improvements in pain management can not only
it consistently as long as it works for the person. decrease discomfort but also improve functional
• Effective pain assessment gathers information abilities, mood, appetite, sleep, and overall
about: quality of life.
• Where the pain occurs and whether it moves to • Pain assessment and management should
other locations try to incorporate an interdisciplinary approach.
• Type of pain and what makes it better or worse Qualified health professionals, such as physi-
cians, nurses, psychologists, social workers,
• Effects of pain on the person
and physical and occupational therapists,
• Causes of pain can work together to formulate appropriate
• Whether pain is quick onset or persists over time non-pharmacological approaches including the
• Severity of the pain and whether it interferes use of positioning, heat, cold, aromatherapy,
with daily functioning music and distraction.
• Positive and negative effects of treatment • The doctor or pharmacist should be asked about
the side effects of any drugs used to treat pain
as well as ways to prevent or manage them.
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